Liz Nutting's Reviews > The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks by Rebecca Skloot
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Sep 04, 10

bookshelves: science
Read from August 27 to September 04, 2010

When I was a graduate student in the field of Ethics, one of my favorite pedagogical strategies, as both a teacher and a student, was the case study. A good case study can make an abstract ethical issue more concrete. A really good case study can turn a deeply contentious issue into an opportunity for thoughtfulness and compassion; right and wrong (to the extent that those concepts even belong in the study of ethics) are nuanced by descriptions of circumstances or values or human need that can make it easier to see and hear and believe the ones on the other side(s) of an issue.

Often the case studies are hypothetical, or descriptions of actual cases pared to "just the facts, ma'am," without all the possible extenuating circumstances that can shape difficult decisions. For some students, this causes great angst. How could they be asked to make a judgment, especially one that might involve life or death, without knowing all the details? And of course, at the end of the lesson, everyone wants to know what really happened, how things turned out "in real life." On those rare occasions when we actually do know something of the outcome, it is clear that knowing what "really" happened almost never makes the decision easier, clearer, or less agonizing.

And that is what makes The Immortal Life of Henrietta Lacks so deeply compelling and challenging. It is the rare story of the outcome of a seemingly inconsequential decision by a doctor and a researcher in 1951, one that few at that time would have ever seen as an ethical decision, let alone an unethical one. A researcher studying cell cultures needs samples; a doctor treating a woman with aggressive cervical cancer scrapes a few extra cells of that cancer into a Petri dish for the researcher. The missing cells had no bearing whatsoever on the outcome of the woman's disease, so no harm done. A few weeks later the woman is dead, but her cancer cells are living in the lab.

The bare bones ethical issue at stake--whether it is ethically warranted to take a patient's tissues without consent and subsequently use them for scientific and medical research--is even now not a particularly contentious one...yet. Legally, the case law is settled: tissue removed in the course of medical treatment or testing no longer belongs to the patient. It is, in essence, refuse, and one woman's trash is another man's treasure. Ethically, almost all the professional guidelines encourage researchers to obtain consent, but they have no teeth (and most were non-existent in 1951 anyway). In reality, the vast majority of the tissue taken from patients is of limited use. But there are those rare times when a single person's cells have the potential to break open the worlds of science and medicine, to the benefit of millions--and the enrichment of a very few.

Such was the case with the cells of cervical cancer taken from Henrietta Lacks at Johns Hopkins University hospital. HeLa cells grew in the lab of George Gey. And grew. And grew, unlike any cell before it. Next, they were carried to a different laboratory at the University of Pittsburgh, where Jonas Salk used them to successfully test his polio vaccine, and thus the cancer that had killed Henrietta Lacks directly led to the healing of millions worldwide. Soon HeLa cells would be in almost every major research laboratory in the world. They traveled to Asia to help find a cure for hemorrhagic fever and into space to study the effects of zero gravity on human cells. Even today, almost 60 years after Henrietta's death, HeLa cells are some of the most widely used by the scientific community.

With such immeasurable benefits as these, who could possibly doubt the wisdom of Henrietta's doctor to take a tiny bit of tissue? But the "real" story is much more complicated. Henrietta Lacks was uneducated, poor and black. Her cancer was treated in the "colored" ward of Johns Hopkins. Her death left five children without their mother, to be raised by an abusive cousin. Should any of that matter in weighing the morality of taking tissue from a patient without her consent, especially in light of the benefits?

God knows our country's history of medical experimentation on the poor and minority populations is not pretty. Ironically, one of the laboratories researching with HeLa cells in the 1950s was the one at the Tuskegee Institute--at the very same time that the infamous syphilis studies were taking place. In light of that history, Henrietta's race and socioeconomic status can't help but be relevant factors in her particular case. But her children's status? What bearing does that have?

According to author Rebecca Skloot, in ethical discussions of the use of human tissue, "[t]here are, essentially, two issues to deal with: consent and money." Both become issues for Henrietta's children. The family didn't learn until 1973 that their mother's cells had been taken, or that they'd played such a vital role in the development of scientific knowledge. They spent the next 30 years trying to learn more about their mother's cells. As they learned of the money made by the pharmaceutical companies and other companies as a direct result of HeLa cells, they inevitably asked questions about what share, if any, they were entitled to. As Henrietta's eldest son put it, "If our mother so important to science, why can't we get health insurance?"

But even more than financial compensation, the family wants recognition--and respect--for their mother. They want the woman behind her contributions acknowledged for who she is--a black woman, a mother, a person with name longer than four letters. And they want to know the mother they never knew, to find out the facts of her death. In the lab at Johns Hopkins, looking through a microscope at her mother's cells for the first time, daughter Deborah sums it up: "John Hopkin [sic] is a school for learning, and that's important. But this is my mother. Nobody seem to get that."

Would a fully informed Henrietta Lacks have made the decision to give her tissue to George Gey if asked? Would her decision either way have had any affect whatsoever on her children's future lives? We'll never know, of course. But reading the story behind the case study makes these questions far more potent than any ethics textbook can. And as science now unravels the strains of our DNA--thanks in no small part to HeLa--these are no longer inconsequential questions for any of us. Perhaps we, too, like the doctors and scientists who have long studied HeLa, can learn from the case study of Henrietta Lacks.
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Comments (showing 1-7 of 7) (7 new)

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Cori Sherman North Thanks for sharing your thoughtful response to this read!

butter be scotch Well written. But I think you overdid it, just my cent.

Also can you rephrase this: Should any of that matter in weighing the morality of taking tissue from a patient without her consent, especially in light of the benefits?

I can't find the verb. <_<

Alcina Marvelous, thank you!

Saida Latigue Perfect review, very concise.

message 5: by Alcina (last edited Apr 11, 2012 08:12AM) (new) - rated it 5 stars

Alcina Nice analysis! Thanks... although I agree with other critics on Goodreads that Ms. Skloot did exactly what she accuses other journalist of and hounded the family until she got her story (which is well done and compassionate)and deserves some critique for coming off as a little ethically superior to other journalists that were also interested in going deeper into the story. I think it's important to notice this as a problem, even though I like her. I am now reading more 'medical journalism' because I found the story so disturbing and fascinating. If you have not read 'The Spirit Catches You When You Fall Down', I suggest it.

Jenie Good review. And none of your sentence structures bother me. I found the verb in all of them.

Marilyn Peters Incredibly informative review of this fine work

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